Here’s a list of first-person narratives by and interviews with people who have TMAU/similar disabilities. It’s a work in progress and more links will be added as they come to my attention. Content warning: many of the videos and texts below discuss bullying, discrimination, and suicide.
Alexis “I don’t really care how anybody feels, what they think, you know, especially if it’s not someone who’s dealing with the same thing that I’m dealing with.”
Alyssa “My advice for kids that are being bullied for anything would just be, let it go. Just toughen up and get through it. I have to live with it. It’s never going to go away.”
Ashley Smells Like Garbage! Young adult novel (2018).
Atieno “I was called by the hotel management, saying that I have to leave the hotel.”
Body Odor Sufferers YouTube channel “Is our condition the worst social stigma? Could we be more visible? Here’s another question: […] do you feel that there’s going to be one point where you’ll be brave enough to show your face, where you’ll not fear embarrassment or, you know, criticisms, and you’ll say, “Yeah, I have this weird condition that makes me smell bad, and that’s just what it is”?”
brittanae “You’ve got to back your own self up, because nobody’s going to have your back like that.”
Cassie “An official diagnosis means that when people tell you “It doesn’t exist,” you can kind of hold up a letter to them and say, “It’s right here, it’s right here, it definitely exists, and I have it.””
Cheryl “You can get flown down [for a job interview], and you can tell that the faces, the enthusiasm, just kind of drains out of them. If you do get a job, it’s a battle to keep it.”
Claire “I only go out places if I know I’m going to be outside.”
DaisyTalks “They didn’t believe me. They thought it was just in my head. And you know, I was like, really suicidal at the time, man, because nobody believed me. That’s what was really killing me in the inside, was, I felt like I was crazy because nobody was listening to me…”
Dre The Survivor “I don’t want anybody to feel sorry for me; all I want is respect.”
Ellie “People are cruel because of ignorance; once they know it’s a medical condition, you can’t help it, they are actually very supportive. And it’s like any hidden disability: if people don’t know about it, bad behavior can result.”
Fish Smell Syndrome TMAU ‘Like Living with a Death Sentence.’
Hi “I think because I don’t react to them sniffing around me, I think that they think that I don’t know that I smell, but I do. It’s just, I know I smell, but there’s nothing I can do to get rid of it, because it’s medical, it’s not a hygiene issue.”
hiking bae “I’m working a temp job right now and people are just, you know, coughing and rubbing their nose and spraying perfume and all this other stuff, and you know, I hear these slick comments like, “Oh, she must not be right in the head,” “Oh, she can’t take care of her hygiene.” It has nothing to do with hygiene.”
Jess “Why do we, like, hesitate to do things that we want to do and we don’t do it because of what other people think? Like, we don’t know when is our last day here. We have to live, we have to love, we have to, like… do what you wanna do. Fuck what other people say.”
kelly “I just thought, if one person sees it and feels less alone, that’s great. Little did I realize, that one person would end up being me. I don’t feel so alone, because of doing that video.”
kenneth “This is our life, and we’re not going to let anyone take anything away from us.”
LaTasha “It feels like you’re in high school all over again, and it’s like, I didn’t even have to deal with this when I was in high school. But it’s really, like, it just makes you see how immature and insensitive grown adults are in society, and it’s really, really, really sad.”
lisa “In a shelter, I was made to take off my clothes and bathe in front of, I believe it was one of the members of the shelter there. They thought that maybe I just didn’t take a shower. But I explained to them that I had a medical condition. That was still not enough.”
‘My awful odour is keeping me from being able to work’. Article with interviews.
odetolatifah “Suffering with this condition can really have you feeling less than a human. It can take away some parts of your humanity, just because of the strife that you encounter on a day to day basis from people who just find your being, just your being, offensive.”
Our Journey: Overcoming the Stigma of the Invisible Monster. Anthology of short stories, poems, art and informative texts by people with TMAU and related conditions.
Oscar “We have virtual meetings because most, if not all members, try as much to avoid public transport because of the effect it will have on them and the people in the matatu. It feels nice to help or talk to someone with a condition like yours.”
Shelly “This is the exact reason why I get up here and I do these videos: because I am tired of having to read articles about somebody killing themselves for getting bullied.”
The Beautiful Woman That Stunk : A true story based on a woman’s personal struggles with body odor. Book.
The Secret Life of a TMAU Sufferer: Trimethylaminuria or TMAU for Short. Book.
TMAU Up podcast “This channel is dedicated to be a safe haven for sufferers of TMAU or TMAU related symptoms so that they can escape from the harsh life that can occur due to the symptoms. Here, we’ll chill, talk about sports, games, TV, everything you can imagine!”
Welcome to Letty’s life “I was like, oh my gosh, this is the bitch I work for, and she is literally trying to get me out of this job. So the person on this forum, was on like on this legal forum, and they were asking how, that they had a coworker, that they had an employee or whatever, that they thought had TMAU, and they were like, how do I get her to quit the job without forcing her out? And literally the lawyer that was on there wrote back to her or wrote back to this person, and was like, you guys have to make her quit. You guys have to ridicule her to the point where she will quit herself. Well, baby, they succeeded.”
YTAK “The key thing is to not lose your confidence. You have to keep going out, and keep going to school, and keep going to college, and keep going to university, and keep going on with your life, because that’s the only way you can beat that condition. Even if people say, “You smell like shit,” even if people say, “You’re disgusting,” even if people say, “You’re unhygienic,” you have to keep going, even though you’re going through hell, because that is the way to overcome this disease…”